The way most parents behave when there is mental illness in their family is to shut down their emotional life. I know that because I did it – but was told to resist it.
My inability to talk about my feelings at that time left me stuck and frozen. Then I learned how to speak out and it helped so much. Now, nobody can say much behind my back because it has all been said. Family relationships are cast in disarray due to the confusion around the ill relative. Our other children suffered as they were emotionally enmeshed with their older sibling. Most other relatives did not know how to react. I believe that this is not unusual.
My children felt grief for what they had lost. They had been close to their brother, shared secrets, done things together and built a close relationship. It was hard for them to learn that mental illness, like other diseases, is a part of the varied fabric of life. They had to learn that mental illness was a biological brain disease and this took a long time to absorb. Invisible illnesses are always more difficult to handle than physical ones that everyone can see. There were people who asked them why ‘the psychologist or psychiatrist’ didn’t fix their brother’s problem. I
Strange behavior is a symptom of the disorder that can be embarrassing for a teenager to deal with. The needs of the mentally ill person do not necessarily come first and it is so important to set boundaries and explain that there are limits. This is not easy to do as parents often want to compensate by being extra good to their mentally ill child.
Mental health professionals have varied degrees of competence the same as any other doctor or surgeon, so it is acceptable to change doctors.
I remember feeling a whole lot of emotions like fear, guilt, anger, grief, sadness and confusion. Attending a support group for parents with children with various mental illnessness was most helpful. They became our extended family and gave the much needed support and advice.
I have to admit that at the time, I did not understand how to carry out the following advice given to us by various professionals:
- It’s advisable to provide a structured, supportive, tolerant and low stress environment. But, when neither my husband nor I knew what had hit us and when the whole family was in total chaos, this was difficult.
- We were advised to keep our home atmosphere as calm as possible.
- We were advised not to get overinvolved with our ill son. He was on medication due to his paranoid schizophrenia so – what is involved and, what is overinvolved? We had to give him psychological as well as physical space, keep criticism and over- enthusiastic praise to a minimum.
- We tried not to get irritated when he paced a lot because my son’s pacing reminded me of a lion in a cage and was unsettling.
- We were told to put limits on bizarre or hostile behavior. We even heard that delusional verbalizations would decrease if we told him in a bland way that it was inappropriate. Like hell it decreased!
- Our son had paranoid ideas and we did learn not to argue as it was useless. All we could do was empathize with him.
- We were told to take care of ourselves. I didn’t even know that I existed. I did what I had to do at home, went to work, tried to give our daughters as much attention as I possibly could as my husband was giving all his attention to our son, being sure that the weakest needed the most attention; tried to spend some time with my husband, so … where did taking care of myself come in?
- A smart social worker told me; ‘The future is unpredictable so stay with the present.’ Sounds easy, doesn’t it? Neither of us succeeded. Over a period of time we reduced our expectations for a rapid recovery, a slow recovery, and then … no recovery.
So, we did not manage to follow the advice: Modify overall expectations and strike a reasonable balance between realism and hope.
This is the story of one family, my family, the story of millions of families all over the world.
This is the way we learned to cope with mental illness in our family, but it took a long time.
- We learned that mental illness cannot be cured.
- Despite our best efforts, symptoms got worse but of course, they could improve.
- I knew that when I felt resentful, I was giving too much of myself.
- I learned that it was harder for our son to accept his disorder as it was for the rest of us.
- Acceptance of mental illness was very hard.
- It took us a long time to learn that a delusion would not go away so it was better for us all not to get into a discussion with our son on that subject.
- I learned a lot about myself as I learned about David’s psychiatric disorder.
- I tried my hardest to separate David from his illness but did not always succeed. I loved him even while I hated schizophrenia.
- I also found it difficult to separate the side effects of his medication from him.
- I knew that it was not okay when I neglected myself because I had needs and wants like the rest of the people out there.
- We knew that no one could be blamed for causing schizophrenia and that it was nothing to be ashamed of but at first, it took me a long time before I could talk about it.
- I had to learn to talk about it because my anger was destroying me.
- While my husband always used a sense of humor when dealing with our son, I lost mine. I never saw anything amusing.
- I realized that I had to renegotiate my emotional relationships.
- I had to revise my expectations. Success for each of our family members was different.
- As a survival orientated response to the things that were occurring in our house, I shut down my emotional life instinctively. Maybe I should have resisted this.
- My inability to talk about my feelings at the beginning, left me stuck, frozen.
- Our family relationships were in disarray in the confusion of schizophrenia.
- Our family became emotionally enmeshed while other people became estranged, not wanting to be part of the ‘madness’ in the family, afraid that our son would call too often or visit too often. He called but never visited without an invitation.
- After sadness and a whole lot of anger, I reached the acceptance stage.
- I reminded myself continuously that mental illness is a biological brain disease. This helped a lot.
- I learned from the members of the support group that we joined, to look at the half full cup.
- I learned from these wonderful, supportive people to do something I liked every single day. I walked along the beach and watched the sun set. I became more appreciative of nature.
- It was soothing to visit a good friend and then, I joined a creative writing group. I think that’s what changed my life dramatically as I could tap on the keys of my computer and escape from my real life into one of fantasy, writing stories about anything I wanted. This helped me a great deal and over the years, when my husband passed away, it was my writing that was the best therapy. Once again I attended a support group and the widows helped one another. Belonging to a support group was for me the best thing I could have done.